I Saw the neuro have been seeing her since 2007 when I lost my sight -got sight back. Well it was awakening with her examination I realised that most of my left side of my body I can't feel a pin prick, I have no taste or smell, I can't feel heat in the mouth, or other parts of my body. I have double vision in central vision. She detailed all of this to ensure MRI caught it all and booked a spinal MRI as soon as I can get one. Then Sat afternoon I got three calls from her re my double vision. She appears rather concerned! Oh well MRI on mon morning. She said it was one of three things at this stage before MRI results to prepare me. Either: MS, Lupus-central nerves cystem, or Lupus-vascularitis. I have the skin Lupus. In one breath she is hoping that it is MS as she said the drugs used have less side effects, but in the next breath she said she would also prefer that there were no lesions on the MRI. I am assuming after her calls on sat that if there was anything to worry about she will call me. So if no news that will be good. I then get the MRI on my spine in two weeks. I have had double vision on and off since 2007 but this is a bit worrying. I am just going to try and keep myself busy while I wait. On the good side it is getting closer to have all of my symptoms accounted for. I will keep you updated.

rob

01-22-2012, 04:38 AM

Hi Desley,

Sorry to hear you are still having all these CNS problems. As you probably know, I have MS, as well as SLE.

Maybe some of what I experienced during my diagnosis could help you somehow. After I had MRI's that showed white-matter lesions, they went straight to a lumbar puncture and then nerve conduction and evoked potentials tests. I don't recall a spinal MRI, but my memory of that time isn't very good. I get total numbness, but rather than being bilateral, mine is unilateral, from about my mid thighs down. I lose all sensation, but still have full control of my legs. For eyesight, I've had no double vision, instead I get nystagmus-both eyes, and optic neuritis, usually the right eye.

My first symptoms were the leg numbness and falling hard, like somebody flipped a switch and my legs just gave out. I'm 6'1" and 200lbs, so it's a long way down, and I hit hard! I also had the neuritis in the right eye, and dragging of my right foot. One ongoing problem is diminished sensation in my fingers which causes me to drop things all the time because I can't sense pressure. Stuff just slips out of my hand. I have to be careful because I can burn my hands and not realize it.

The main line of defense for me right now is IV Infusions of Methylprednisolone. I get the infusions three days a month, and it takes about 90 minutes to do each one. It doesn't have the side effect of weight gain for me, just jitters and insomnia/nightmares when I first started it. It does a pretty good job of controling my MS symptoms.

If it's MS, the meds available are fairly effective, and fast acting. There are quite a few treatment options as well, and many seem to be effective. I hope you get this figured out soon. CNS problems can be a real nightmare to deal with.

Rob

Desleywr

01-22-2012, 05:47 AM

Thanks Rob
I appreciate your info it does sound so very similar. Ihad a spinal tap back in 2007and that showed extra protein back then. It is the white matter that hasn't been caught on an MRI yet. As she said ms is easier to control with less side effects. But I feel I am prepared for anything and nothing at all. I have been on this treadmill for years now but I really feel that I am at the end especially by the reaction of the neuro. Yes heat is a concern with my hands.

I will keep reporting what happens thanks very much. It is a bit scary and especially with my eyes as I do love painting in watercolour so very much. Ahhh well I have been recently drawn to abstract lately maybe for a reason...HEE HEE. You have got to laugh at yourself!
Thanks!

rob

01-22-2012, 07:49 AM

I will keep reporting what happens thanks very much. It is a bit scary and especially with my eyes as I do love painting in watercolour so very much. Ahhh well I have been recently drawn to abstract lately maybe for a reason...HEE HEE. You have got to laugh at yourself!
Thanks!

Now there is a familiar problem...

I paint miniature soldiers, and as my hands become less and less steady with time, and from the numbness, the soldiers are having to become less miniature! I've gone from painting hordes of little 15mm tall soldiers to much larger single ones that are from 20-40cm tall.

I bet they would like some of your future abstract paintings to decorate their not so minature barracks!

Rob

red246

01-22-2012, 08:46 AM

Desley,

I'm also having MRI on Monday due to CNS issues. It seems that every time I flare it effects my nervous system more and more. I hope that we both get some answers and treatment that works!

Rob - I love to paint ceramics, mainly Christmas villages and accessories. I did one lovely set for my brother-in-law's family and haven't been able to do another since. I can't find pieces that are bigger. :(

Desleywr

01-22-2012, 09:26 PM

Sounds great! HEE HEE
Just got back 1.5hrs in the MRI machine with dye. They put an urgent on it! So no news must be good news? I will wait and see.
Thanks for your support!

magistramarla

01-22-2012, 09:47 PM

Desley,
Good luck with finding some answers. I also have nystagmus - it's been noted several times. I also don't feel a pin prick or heat very well, but for me it is mostly from my knees down. My hands have been getting sort of numb lately, especially in the morning, and I know what Rob means about things just slipping out of the fingers, I can also pick up hot foods right out of the pan with my fingertips.
I had an MRI and a spinal tap back in 2010, and since everything was normal, the neuro told me that nothing was wrong with me!
I hope that you have better luck than I did!
Hugs,
Marla

Desleywr

01-22-2012, 10:12 PM

Thanks Marla
Yes me too previously. This time that the MRI was done I actually was in a flare so at least I have a better chance than before as each time by the time I got the appointment it had settled. My vision, reaction to light and heat today along with tingling of my feet and mild twitching are all active today. So if something is going to show up then it has the best chance. I was also told by neuro that Lupus cns doesn't show up in a MRI. then as she said it could be Lupus vasculitus. I have had some of these symptoms on and off over the past 5 years but this time it was seen by the neuro. I just have to wait now.

red246

01-24-2012, 06:53 AM

Desley,

Wow! 1.5 hours in the MRI? I don't think I could do that. Did you get copies of your films? I think I'm going to have to get a special box to put all mine, and blood test copies, into. lol I should have gotten mine on cd - would have taken up much less room. Please keep us updated. (((hugs)))

lizbond36

01-30-2012, 04:07 PM

I have everything you put in the subjact line plus more. My nuro told me I have CNS Lupus. I hope everything works out I know how you feel dear. Need anything just PM me :-)
Hugs
Liz

Desleywr

01-30-2012, 04:28 PM

I have everything you put in the subjact line plus more. My nuro told me I have CNS Lupus. I hope everything works out I know how you feel dear. Need anything just PM me :-)
Hugs
Liz

Thank you so much for your support!

I have the MRI completed head and spine. It should have arrived at neuro by yesterday. I haven't heard anything eg I am gathering if it showed MS she would contact me to urgently go on meds for that. So if she doesn't contact me I am gathering it might be CNS or Vasculitus. She did tell me. mS drugs were less side effects. I believe she will contact me as we are in contact recently on another matter.

I gave her one of my paintings for Xmas and she loved it so much she is paying me for another matching it. We have had a dozen emails back and forth discussing the painting criteria, and I have been seeing her for the past five yrs.

I have still no taste and smell and can't feel heat in my mouth. Before this I noticed my nose was very dry, and now I am noticing that my eyes are getting dry.

What drugs are you on for the CNS? Or anyone what drugs are used? Thanks very much for the support as it is a scary time.

red246

01-30-2012, 10:13 PM

Hoping you hear something soon! I go see the new Neuro next Monday. I'm going to call my rheumy tomorrow to see if she got the report on the MRI. Glad I re-read your post - reminded me that I need to write down stuff for the appt! lol

Desleywr

01-31-2012, 02:57 AM

Good luck! Let us know how you go!

Desleywr

02-04-2012, 05:54 AM

I see the Neuro on the 24th Feb can't wait!

Desleywr

02-07-2012, 05:00 PM

I have another 4day halter monitor on at the moment. Having lots of episodes of irregular heart beats it never ends.

Desleywr

02-15-2012, 06:12 AM

At hospital last Fri with irregular heart beat. They were great my cardio was contacted immediately as the print out the ed dr said he had never seen a rhythm like that. Oh well got to be different HEE HEE. I feel so great that they were able to capture on paper, and the direction of what to do by cardio. See in his rooms next week same day as neuro so big day and lots of expectations.